4-year-old James Deere long recovery from septic shock

Joe Sinisgalli, the grandfather of James Deere, kept an online journal of James’ illness and recovery after the toddler suffered brain damage and lost an arm and leg to a septic infection. The journal shows a smattering of the ups and downs the boy has lived through in the past year and a half, but it focuses on the positives. The real journey was even tougher, family members said. (A story will appear in the Times Union next week.)

Here are some excerpts from Joe Sinisgalli’s journal. Most of the dates indicate when the entry was made and may not perfectly reflect the date of the events described.

April 12, 2010: James is admitted to the hospital for a septic infection.

April 30: Doctors remove James from a ventilator. “There are no guarantees for the future, however, given his age there is hope for recovery and personally I am optimistic. This “Little Man” continues to amaze the doctors with his toughness, determination and recuperative ability, I expect nothing less! … Please continue to pray for James and his family.”

May 3: James is suffering from seizures or “neurostorms.” “This is very intense.”

May 4: Heather held James for the first time in three weeks. “This is indeed a good day!”

May 28: James has a whiny day “but I believe a good whine since I believe it reflects his awakening.”

June 2: James moves out of the pediatric ICU to the pediatric wing. “The best day we have experienced in 7 weeks! We have much to be thankful for, indeed those prayers are paying dividends so let’s not stop we still have a long ways to go.”

June 3: “It seems that almost every day poses a battle concerning James. The latest is the rash. James is entirely covered … James has been a tough trooper through this entire ordeal and it would be nice for him to catch a break. He deserves it.”

June 19: James readmitted to the PICU because the neurostorms continue.

June 26: Starting to hold his head up and following people with his eyes and responding to his image in the mirror. “Each day is an adventure but I do believe we are making progress.”

June 28: James moves to Sunnyview Rehabilitation Hospital.

July 2: “He seems to enjoy all his therapies, I think it is all the fuss the young female therapists give him.”

July 10: Jimmy Deere, James’ dad, has pneumonia and Heather has bronchitis.

July 22: James enjoys a lollypop in speech therapy. “Thus far, I think it is fair to say that this week will probably be the best week James has had since this all began more than 14 weeks ago.”

July 31: James is readmitted to the hospital. He has been twitching and crying with a look of fear on his face.

Aug. 2: Tests show that James’ kidney is not improving and James may need dialysis indefinitely.

Aug. 4: “Tuesday and today have proved to be the worst days for James and our family except for the day on which this all began.” A brain MRI shows that his neurological condition has worsened. He has a fever apparently caused by an infection, and his dialysis catheter failed. An X-ray showed he has a fracture in his left foot. “It is unbelievable as to how much bad news we could cram in a 24 hour period. However, through this all James remains strong and we all need to draw our strength for James.

Aug. 5: James has another strep infection and fever.

Sept 2: James moves to Boston Children’s Hospital.

Sept 7: James has an infection in a PIC line and a C-diff infection

Sept. 10: James hip has become dislocated, apparently due to inactivity of muscles.

Sept 12: “A marvelous development has been James smiling. It seems that before he got sick he made up a joke with a character called “Shabi Dabi.” His father started retelling James that story and the “Little Man” reacts with a great smile. I’m not a doctor but I take that as a very positive sign.”

Sept. 13: James is smiling often and laughing out loud. He has gone a week without dialysis.

Sept. 20: “Today marks 23 weeks since this epic began. However, I believe we are finally on the road to recovery I think we will know better in a week… He responds with a purposeful laugh out loud to his father’s fart jokes. “Amazing!!”

Sept. 26: James’ birthday.

Oct. 14: James has surgery to address his hip. Surgeons discover that the hip joint was infected, which may have caused the dislocation.

Oct. 25: James is transferred to Spaulding Rehab Hospital in downtown Boston. “Since the people in Boston have worked their magic, virtually all of the very serious medical issues James has had are under control, thank God!”

Oct. 27: James spikes a fever and has bloody diarrhea. He is transferred back to Children’s Hospital.

Nov. 18: Heather and Hope visit James. “It as a very heartfelt Deere family gathering for the first time, however it will not be the last. James kept an eye on Hope not quite knowing what to make of her, but the love was very present in the room.” Heather and Hope go home to New York.

Nov. 26: “Thanksgiving was a strange day for our family. It was the first time that we all weren’t together for the holiday, a very empty feeling, but necessary…. Upon reflecting about Thanksgiving truly our family has much to be thankful for. The year has been a trying and challenging one but when we consider where James was on 4/12/10 vs. where he is today, we have much to thank God for.

Dec 8: Heather and Hope visit James.

Dec. 14: James is transferred to Children’s Hospital ER after days of being unsettled and crying.

Dec. 17: Returns to Spaulding.

Dec. 20: James stands on a tilt table with his prosthetic leg.

Dec. 25: The family spends Christmas in an apartment across the street from Spaulding and James plays with his sister. “We have all grown as a result of this situation and many wonderful people have been here to aid, assist and pray for this little boy and his family.”

Jan. 13: James starts eating baby food by mouth, but cannot walk or talk. “I believe the remaining two are attainable but will require patience, much hard work as well as a lot of love and support. I expect to deliver on all of the above! James is very strong physically, strong will and he likes doing therapy.”

Jan. 19: “The improvement in James since first arriving in Boston is remarkable if not miraculous.”

Jan. 28: James is in pain and is taken to Children’s Hospital.

Jan. 30: James returns to Spaulding. He has grown 4 inches and gained 8.5 pounds in weight since coming to Boston.

Feb: 23: James comes home to Waterford after 318 days away.

March 5: “There is much more responsibility which we the family have had to assume vs James being in the hospital.”

March 14: James is diagnosed as having cortical blindness which means he has functioning eyesight, however, the brain has a problem processing the image.

May 7: James attends school at the Center for Disabilities.

May 13: James begins eating table food, like bagels.

June 26: James is put in a harness that allows him to stand by himself on a treadmill.

July 17: “James has had an excellent week, probably his best week since becoming ill. He started back to school and did very well. He seems to like school very much … His teacher and aides have all said that each day was excellent for James, very engaging and happy. They too see and hear him trying to speak.”